Dementia Resources for Primary Care in Ireland - Management of … · 2020-03-27 · Palliative...

PALLIATIVE CARE FOR THE PERSON WITH DEMENTIA

GUIDANCE DOCUMENT 4

Management ofHydration and Nutrition

The Irish Hospice Foundation, 2016

Palliative Care for the Person with Dementia

Guidance Document 4: Management of Hydration and Nutrition.

Published and funded by The Irish Hospice Foundation

Guidance Documents No. 4-7 Project Lead: Dr. Alice Coffey

Guidance Documents No. 4-7 Project Researcher: Dr. Kathleen McLoughlin

Principal Investigator for Hydration and Nutrition: Dr. Irene Hartigan

Authors: Dr. Irene Hartigan, Sheila Robinson, Mary P. O’Sullivan, Dr. Kathleen McLoughlin,Dr. Paul Gallagher, Dr. Suzanne Timmons.

Date: August 2016

Cite as: Hartigan, I., Robinson, S., O'Sullivan, M., McLoughlin, K., Gallagher, P. and Timmons,S. (2016). Palliative Care for the Person with Dementia. Guidance Document 4: Managementof Hydration and Nutrition. Dublin: Irish Hospice Foundation.

DISCLAIMER AND WAIVER OF LIABILITY

This guidance was developed after careful consideration of the evidence available at time ofpublication. Whilst every effort has been made by the authors to ensure the accuracy of theinformation and material contained in this document, errors or omissions may occur in thecontent.

This is a guidance document provided for information and educational purposes only. It hasbeen designed to assist healthcare providers by providing an evidence-based framework fordecision-making strategies. It has been published in accordance with available evidence atthe time of publication.

This guidance document is not intended as a sole source of guidance for decision makingfor the management of hydration and nutrition of people with dementia.

This guidance is not intended to replace clinical judgment or establish a protocol for allindividuals with this condition. Guidance documents do not purport to be a legal standardof care. The guidance does not override the individual responsibility of healthcareprofessionals to make decisions appropriate to the circumstances of individual patients inconsultation with the patient and/or family. Adherence to this guidance will not ensuresuccessful patient outcomes in every situation.

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.

1. Background 5

2. Introduction to this guidance document 6

3. Themes from the literature 9

4. Overarching principles to guide good practice 11

5. Guidance and resources 12

Guidance 1. Common Eating, Drinking and Swallowing Difficulties in People with Dementia 12

Guidance 2. Assessment of Hydration and Nutrition 16

Guidance 3. Management of Hydration and Nutrition 22

Guidance 4. Decision-Making – Balancing Different Views 26

6. Additional Resources 35

6.1 Understanding the progression of dementia 35

6.2 Factsheets to accompany this document 37

7. Conclusion 43

APPENDIX 1 - Steering and project group membership 44

APPENDIX 2 - Methodology 45

References 49

Management of Hydration and Nutrition

Contents

Management of Hydration and Nutrition2

WHAT IS PALLIATIVE CARE?

Palliative care is an approach that improves the quality of life of patients and their familiesfacing the problems associated with life-threatening illness, through the prevention andrelief of suffering by means of early identification and impeccable assessment andtreatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care:

• provides relief from pain and other distressing symptoms;

• affirms life and regards dying as a normal process;

• intends neither to hasten or postpone death;

• integrates the psychological and spiritual aspects of patient care;

• offers a support system to help patients live as actively as possible until death;

• offers a support system to help the family cope during the patient’s illness and intheir own bereavement;

• uses a team approach to address the needs of patients and their families, includingbereavement counselling, if indicated;

• will enhance quality of life, and may also positively influence the course of illness;

• is applicable early in the course of illness, in conjunction with other therapies thatare intended to prolong life, such as chemotherapy or radiation therapy, and includesthose investigations needed to better understand and manage distressing clinicalcomplications.

WHO (2016) Definition of Palliative Care http://www.who.int/cancer/palliative/definition/en/

http://www.who.int/cancer/palliative/definition/en/

3Management of Hydration and Nutrition

GLOSSARY OF TERMS

Agnosia: An inability to recognise and identify objects or persons. Agnosia can be limited to onesensory modality such as vision or hearing. For example, a person may have difficulty in recognisingan object as a cup or identifying a sound as a cough. Agnosia can result from strokes, dementia,developmental disorders, or other neurological conditions.1

Apraxia: Disruption to the selection, motor programming and online control of voluntary movements2.Apraxia may affect different patterns of movement, such as apraxia of speech, apraxia of swallow, orapraxia for self-feeding.

Aspiration: Entry of secretions, food, or any foreign material into the airway that travels below thelevel of the true vocal folds. Aspiration may occur before, during, or after the pharyngeal phase ofswallowing. It can also occur from reflux of gastric contents3.

Dysphagia: Eating and drinking disorders which may occur in the oral, pharyngeal and oesophagealstages of deglutition2. Dysphagia includes difficulty swallowing food, fluids, medications and aperson’s own saliva.

Oral Intake: Placement of food in the mouth; oral gestures used to prepare food for the swallowand gain pleasure from eating; and tongue movement to initiate the oral stage of the swallow. Thissometimes refers to the amount of food or liquid the individual is able to take in by mouth3.

Oral care: The effective removal of plaque and debris to ensure the structures and tissues of themouth are kept in a healthy condition.

Xerostomia: Dry mouth resulting from reduced or absent saliva flow. Xerostomia may be a symptomof various medical conditions, a side effect of radiation to the head and neck, or a side effect of awide variety of medications. It may or may not be associated with decreased salivary gland function4.


Section 1

BACKGROUND

Dementia is an umbrella term used to describe a condition which may be caused by a number ofillnesses in which there is progressive decline in multiple areas of function including; decline inmemory, reasoning, communication skills and in the ability to carry out daily activities5. The numberof people living with dementia in Ireland today is estimated to be around 48,000 and this number isset to treble by 20456. Dementia is a chronic, life limiting condition7–9.

People with dementia have a unique set of care needs which include: a progressive cognitiveimpairment; diminishing capacity; communication difficulties; possible responsive behaviours and aprolonged illness trajectory leading to uncertainty in relation to prognosis5,10. People dying with andor/from dementia require staff to have knowledge, skills, competence and confidence in bothdementia and palliative care11. Palliative dementia care involves supporting the person with dementiaand their family to address and relieve the pain, distress and discomfort associated with advancingdementia and inviting them to participate in making decisions about future care needs12. Providingthis care and comfort presents services with a significant challenge as each person’s journey throughdementia is unique with huge variability in the length of the final phase, difficulties in communicationand a lack of awareness about the terminal nature of dementia9,13. This is often compounded by stafflacking basic knowledge, awareness and skills in supporting people with dementia5,9. It isrecommended that palliative care principles are introduced in the person’s care early on, ideally soonafter diagnosis when the person can meaningfully engage in discussions about their future care7,12,13.

As illustrated, there has been growing recognition of the complexities involved in providing end-of-life care for people with dementia in the literature; however, there is a notable void of practiceguidelines to support healthcare staff in delivering excellence in end-of-life care for people withdementia. In order to support staff in meeting the palliative care needs of people with dementia, therewas a call for the development of practice guidelines for the Irish context 12,14,15,16.

The following series of guidance documents has been developed as part of the Irish HospiceFoundation’s Changing Minds Programme:

1. Facilitating discussions about end-of-life care with the person with dementia2. Advance healthcare directives and advance care planning3. Loss and grief in dementia4. Management of hydration and nutrition5. Pain assessment and management6. Ethical decision-making7. Medication management

Irish Hospice Foundation (IHF) have taken the lead for the development of guidance documents 1 –3 with assistance from relevant experts. University Collge Cork (UCC) successfully tendered for thedevelopment of the guidance documents 4-7.

The steering group and project team overseeing the development of this guidance document arelisted in Appendix 1.

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INTRODUCTION TO THIS GUIDANCE DOCUMENT

“Over the course of the dementia trajectory, maintaining oral intake offood and fluids can be challenging. Oral health and dysphagia are twoissues that can impact upon both adequate oral intake and comfort insevere dementia. Weight loss may cause concern and can becomeinevitable as death draws near. Artificial nutrition and hydration are notgenerally considered a helpful option in severe dementia”.

Australian Government Initiative17

Dementia is a progressive, life-limiting and incurable condition with a varying trajectory dependingon both the type of dementia and the stage of its severity (see Section 6 – Additional Resources).People living with dementia may experience problems with eating, drinking and swallowing and havea reduced appetite. This can result in potential nutrient deficiencies18, significant weight loss andvitamin deficiency19,20 which in turn can lead to sub-optimal health, increased risk of fracturesfollowing falls, poor concentration and behaviours which further negatively impact on eating anddrinking. As a person’s dementia progresses, maintaining oral intake of food and fluids may bechallenging and guidance regarding evidence-based approaches to care is required.

Aim

The aim of this guidance document is to provide evidence-based guidance for healthcare workerson best practice in relation to the assessment and management of hydration and nutrition for aperson with dementia throughout their dementia journey. This in turn will support healthcareprofessionals in their decision-making and communication with the person with dementia and theirfamilies/carers.

Despite the presence of evidence-based guidance, ethical dilemmas and difficult decision-makingsituations may arise in practice and readers should also consult Guidance Documents 1, 2 and 6in this series.

Who is this document for?

Clinical and non-clinical healthcare staff working in any setting who care for a person withdementia.

Section 2

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How to use this document

This guidance was developed after careful consideration of the evidence available at time ofpublication and is provided for information and educational purposes. It has been designed to assisthealthcare providers by providing an evidence-based framework for decision-making strategies.

This guidance document is not intended as a sole source of guidance for decision-making for themanagement of hydration and nutrition of people with dementia and is not intended to replace clinicaljudgment or establish a protocol for all individuals with this condition. It does not purport to be alegal standard of care and does not override the individual responsibility of healthcare professionalsto make decisions appropriate to the circumstances of individual patients in consultation with thepatient and/or family.

The factsheets have been developed to summarise key points that may be useful in practiceand can be displayed in the clinical area for reference.

Links to resources considered useful for for people with dementia and/or family caregiversare included where appropriate at the end of the guidance document.

Scope of guidance document

Existing guidance is available to support healthcare staff in ensuring that people receive goodnutritional care, adequate hydration and a positive mealtime experience21,22,23,24. However, suchdocuments lack specific reference to maintaining hydration and nutrition when a condition, such asdementia, progresses. This document is intended to address this identified deficit and should beread in conjunction with such existing guidance.

This guidance document will:

1. Outline common eating, drinking and swallowing (EDS) difficulties for people with dementia,with a particular focus on the end of life.

2. Consider a systematic approach to the assessment and screening of EDS difficulties forpeople with dementia at the end of life

3. Outline the appropriate management of hydration and nutrition issues in end-of-life care ofa person with dementia.

4. Consider decision-making and balancing different views with regard to hydration and nutritionat end of life for people with dementia.

Development of guidance document

This guidance document was developed by a project team and overseen by a steeringcommittee (please see Appendix 1 for membership of both groups) using the processbelow.

1. Completion of scoping review.

2. Collation of key review themes to inform the guidance and principles of assessment andmanagement of hydration and nutrition.

3. Preparation of Draft 1 of guidance document for comment by the project steering committeeand national/international experts in the field.

4. Preparation of Draft 2 for external consultation.

5. Assimilation of feedback from external consultation to final draft. Final version published.

Structure of guidance document

The guidance provided in this document focuses on four key areas, based on the agreed key themesemerging from the scoping review considered most beneficial for professional and non-professionalcaregivers, together with the expert advisor’s feedback (who indicated specific areas that staff maybenefit from guidance on based on their experience in practice). These areas are examined in detailin the following sections, together with the underlying principles that guide the management ofnutrition and hydration in people with end-stage dementia. Where applicable, we have signpostedavailable resources and tools to assist professional and non-professional caregivers.

This document should be read in conjunction with the other guidance documents in this seriesproduced by the Irish Hospice Foundation available via www.hospicefoundation.ie


Section 2

www.hospicefoundation.ie


THEMES FROM THE LITERATURE REVIEW

Dementia palliative care incorporates the qualities of person-centred dementia care and the holisticfocus of palliative care. Both models share a person-centred philosophy and a set of underlyingprinciples that focus on quality of life, whole person care, a respect for autonomy and care of theperson and their family4. Person-centred care seeks to support and maintain personhood throughrelationships and recognises the need for attachment, comfort, identity, occupation and inclusion24,25.These are the core values that underpin and inform this guidance document in order to supportpeople with dementia to live well and die with dignity. The need to support a person with dementiato plan their future care early in the trajectory of their condition has been well documented3,8,26,27,28,29,

A scoping study was undertaken to inform the development of this specific guidance document. Thereview of literature yielded a number of themes:

Literature review themes

1. Challenges associated with hydration and nutrition at end-of-life in dementia.

2. The role of the multi-disciplinary team and the environment in the management of hydrationand nutrition at end-of life in dementia.

3. Care planning and advance discussions.

4. Clinically Assisted Nutrition and Hydration (CANH) at end-of-life in dementia.

The key themes were presented to the project team. These themes were grouped into fouroverarching principles to guide optimal hydration and nutrition at the end of life for people withdementia (Figure 1). In addition, four areas of specific guidance staff considered key to informinggood practice for the management of hydration and nutrition at the end of life for people with dementiaare outlined in this document.

Section 3

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Figure 1: Four overarching principles for for optimal hydration and nutrition for people with dementia.

A person-centred

approach

Planningfuture care

A palliative approach

Ongoing goal orientated

assessment andreassessment

Section 3


OVERARCHING PRINCIPLES TO INFORM GOOD PRACTICE

A set of four overarching principles for optimal hydration and nutrition for people with dementia havebeen agreed by the project team, based on the themes emerging from the literature. These shouldguide best practice when working with people with dementia.

Planning future care should occur at an early stage for a person with dementia30. A discussion shouldtake place with the person about their preferences and wishes in relation to hydration and nutrition assoon after the diagnosis as possible31 (also see Guidance Document 1 and 2). These conversationsshould be revisited and reviewed on a regular basis with the person. Every effort should be made by staffto find out the person’s preferences relating to food and drink on an ongoing basis, and this should beshared with the team to ensure good quality care. The person with advanced dementia will oftencommunicate this in subtle ways such as body language, using their eyes, turning their head, facialexpression, acceptance or rejection of oral intake etc and staff need to be reminded that it is essentialto be ‘tuned in’ to this. It should also be noted that these interactions/wishes should be documented andshared with all key staff working with that person.

A palliative approach from diagnosis to death to support the quality of life of people with dementiashould be adopted.31-36 This approach should extend to the proper assessment and management ofhydration and nutrition. Where a person appears to get enjoyment from eating or drinking, this activityshould continue37. Even though a person with dementia has a cognitive impairment, that person mayretain capacity to make some decisions, especially when care is taken to maximise the person’scommunication abilities. The person’s autonomy can still be promoted through adherence to his/heradvance plans/directives and continued respect for his/her current wishes regarding hydration andnutrition where possible.

A person-centred approach to care seeks to support and maintain personhood through relationshipsand recognises the need for attachment, comfort, identity, occupation and inclusion24. With regard tohydration and nutrition, it is important to know about the person with dementia’s relationship with foodand drink throughout their lifespan, their taste preferences and consider how the condition of dementiamight change these. The loss of neurocognitive and motor skills can make a person’s relationship withfood and drink difficult and this can reduce the enjoyment they may obtain from the experience of eatingand drinking whilst impacting on their optimum hydration and nutrition. Therefore a person-centeredapproach to meals and nutrition is founded on getting to know the individual, their needs andpreferences38.

Ongoing goal orientated assessment and reassessment of hydration and nutrition, with MDT inputas necessary, is essential for optimal hydration and nutriton of people with dementia. Assessment isholistic including physiological data, together with psychological, sociocultural, spiritual and life-styledomains. A thorough assessment and reassessment of the person with dementia will identify their needsand inform management strategies as their condition progresses. People with dementia often lose theability to recognise hunger and thirst and therefore various strategies should be implemented to ensurethat the person with dementia is able to eat and drink comfortably and is provided with food and drink attimes and in quantities adequate for his/her needs. Identifying an individual’s goals at various stages ofdementia will address factors associated with poor hydration and nutrition. The individual’s ability to setgoals may be compromised, therefore the assessment typically should include consideration of theperson’s experience and/or their will and preference together with caregiver reports.

Section 4 4

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Section 5

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GUIDANCE AND RESOURCES

Guidance Area 1

Common Eating, Drinking and Swallowing Difficulties in People withDementia

Dementia alters dietary habits and a person with dementia may develop problems eating, drinkingand swallowing. Challenges may also arise from forgetfulness and eating habits that can disruptdietary intake, eating and drinking routines (Box 1). As the condition progresses, people withdementia may experience:

• Visual agnosia (e.g. difficulty recognising utensils and their function)

• Oral tactile agnosia (e.g. reduced recognition of or sensitivity to food/drink in the mouth)

• Apraxia for independent feeding or swallow (e.g. difficulty bringing food/fluid to the mouth &initiating chewing & swallowing)

• Behavioural difficulties with eating/drinking (e.g. holding food in the mouth, overfilling themouth)

• Dysphagia (difficulty swallowing) and aspiration (food/drink ‘going down the wrong way’ andentering the airway)

• Need for assistance at mealtimes

• Weight loss and cachexia

• Malnutrition

• Dehydration

• Problems with oral health (e.g. dry mouth, ill-fitting dentures)

Dyspraxia/agnosiaUnable to use utensils,inability to distinguishfood from non-food,walks away from table.

ResistanceTurns head away,blocks mouth withhands, bitesassistant, spits orthrows food.

Oral neuromuscularincoordinationWill not open mouth,continuous tongue ormouth movementspreventing ingestion,chews withoutswallowing

Selective behavioursPrefers or will only eatparticular types of food,flavours or consistencies,including, sometimes,fluids only.

Aversive feeding behavioursBOX 1

Sources: Prince, M., Albanese, E., Guerchet, M., & Prina, M. (2014). Nutrition and Dementia: a review of available research (Doctoral dissertation, N/A Ed. London:Alzheimer's Disease International). https://www.alz.co.uk/nutrition-reporthttp://www.kcl.ac.uk/ioppn/depts/hspr/research/cgmhpcr/Projects/GlobalObservatoryforAgeingandDementiaCare.aspx

https://www.alz.co.uk/nutrition-report

http://www.kcl.ac.uk/ioppn/depts/hspr/research/cgmhpcr/Projects/GlobalObservatoryforAgeingandDementiaCare.aspx


The person with dementia will communicate hunger and thirst in different ways and this is oftensubtle, requiring people to know the person well to read these communicative signals. Continuity ofcare and consistency is a key part of good dementia care.

Evidence suggests that difficulty eating and drinking is a marker of advanced dementia and theappearance of dysphagia is often a sign of further disease progression39,40. People who have difficultywith eating and drinking are at risk of nutritional decline, thereby at significant risk of death duringthe following year, regardless of the underlying diagnosis41. Whilst weight loss in advanced dementiacan sometimes be stabilised through nutritional support, it also is a strong predictor of impendingmortality41. As people approach the end of their lives, decreased interest in food is normal36. Thebody’s increasing inability to absorb nutrients is often accompanied by loss of appetite, thirst anddifficulty swallowing39,42. However, the body adapts at the end of life and this prevents people fromsuffering as a result of the absence of food43. Cachexia, where an individual is unable to absorbadequate nutrients from food, even when intake is sufficient, may be viewed as a way of the bodypreparing itself for death, with the person no longer wanting food and becoming very tired and weak44.

Almost 90% of people with dementia experience problems with eating, drinking and swallowing(EDS) in the final three months of life45. Challenges encountered in EDS in advanced dementia as aperson comes to the end of their life include:

• oral versus clinically-assisted nutrition and hydration (CANH)

• maintaining nutrition and hydration

• carer concerns regarding ongoing risk of aspiration

• balancing different views

The Peterborough Guide for Hydration and Nutrition in Advanced Dementia (Box 2) recognises theimportance of a ‘Food First’ approach from the time of diagnosis for those at risk of malnutrition.Food is the first choice to correct or prevent under-nutrition in a person with dementia. This shouldinclude understanding the preferences of the person, ensuring that high calorie food and drink isavailable throughout the day and night and that food is fortified as necessary46.

The principles outlined in Box 2 are appropriate to follow in late stage dementia, even if the person’sfood and fluid intake is very poor.

Assisting someone who is sick to eat and drink is a ‘powerful instinctive act’ and the human contactprovided by the act of assisting with food and drink may be of therapeutic benefit47,48.

A palliative approach with careful assistance to eat and drink is considered to be the mostappropriate option of care for people with dementia at end-of-life. When interest in food is negligible,the individual should not be forced to receive nutrition49.


Section 5

BOX 2: Peterborough Guide46

• Find out what the person’s food preferences were and try encouraging these foods andfluids. However it is also important to remember that for some people with dementia foodpreferences can change, and some people with dementia start to prefer foods or fluidsthat they did not previously like. Some people with dementia develop a marked preferencefor sweet foods so these may be more appetising to the person than savoury foods.

• Ensure appropriate food and fluids are easily available throughout the day and night so thatthe person with dementia can be encouraged to eat and drink whenever he/she is mostalert.

• If a person with dementia frequently wakes at night it is worth considering whether he/sheis waking because of hunger.

• Encourage food and fluids little and often. Many elderly people (with or without dementia)do not have a large appetite, and nutritional needs are more likely to be met via six or sosmall meals and snacks per day rather than three bigger meals.

• Encourage higher calorie foods and drinks. Avoiding high fat and high sugar foods at thisstage is unlikely to be beneficial to health and may increase the risk of malnutrition. Peopleat risk of malnutrition should therefore generally avoid low fat, low sugar, low calorie anddiet foods and drinks.

• Consider food fortification (e.g. dried milk powder can be added to milk for cereal or drinks,custard, porridge, yogurt, milk puddings, cream soups, mashed potato etc.). There are manyother simple ingredients which can be used to fortify food and drinks.

As a person’s condition progresses, he/she may spend longer periods of time in bed and becomedependent on others for all care, and have limited ability to communicate50. He/she may also presentwith other co-morbidities (e.g. intellectual disability, previous cerebrovascular accident, chronicobstructive pulmonary disease) which of themselves can impact on swallowing, and the person’soverall functional baseline. The person with end-stage dementia is likely to present with aspirationpneumonia and dehydration/malnutrition as a result. Appropiate assistance is offered in a discreetand sensitive manner to enable the person to eat and drink safely when necessary.

Food has an emotional, symbolic and social importance which should not be underestimated. Whena person with dementia is no longer able to eat and drink in the way that they would have, this is yetanother loss and change in the landscape for the person and for their family/carers. Grief is a naturalresponse to this loss and may evoke a range of responses from the person with dementia and theirfamily (see Loss and Grief in Dementia Guidance Document 3).


Guidance and Resources

Guidance – Knowledge of hydration and nutrition issuesfor the end-of-life care of a person with dementia.

1. Ensure all members of multi-disciplinary team understand hydrationand nutrition issues at end-of-life in dementia.

2. Access to education on end-of-life care in dementia and palliative careshould be available to those who care for the person with dementiain hospital, residential care settings or at home so that care is providedby health professionals and caregivers with appropriate knowledgeand skills.

3. Regular review of hydration and nutrition is undertaken involvingappropriate formal and informal carers. Healthcare professionals areaware of review principles and tools which may assist in the review inthis process.

4. A Food First approach is important throughout the trajectory of carefor a person with dementia.

5. Artificial feeding should not generally be used in people with severedementia for whom dysphagia or disinclination to eat is amanifestation of disease severity31 (p. 42).

6. Long-term use of artificial hydration and nutrition in people with end-stage dementia is not appropriate

Clinically Assisted Nutrition and HydrationThe research is in clear agreement that the long-term use of artificial hydration and nutrition inpatients with end-stage dementia is not appropriate23, 24, 25 – 27, 30,31,34,50,51

Artificial feeding should not be used in people with severe dementia for whom dysphagia ordisinclination to eat is a manifestation of disease severity31 (p. 42).

This is further discussed in Section 4.


Section 5

Guidance Area 2:

Assessment of Hydration and Nutrition

Advanced dementia is characterised by dependence on another person to assist with eating anddrinking to achieve optimal nutritional intake. The risk of being malnourished and dehydrated increasesdue to the nature of dementia as a progressive illness, coupled with increasing age. It is thereforeessential that adequate systems are in place to assess and monitor hydration and nutrition for personswith dementia52 together with assessment of issues that may impair a person eating, swallowing ordrinking. There is little evidence that people in end-stage dementia experience significant levels ofhunger or thirst53. A holistic assessment by a skilled multi-disciplinary team is recommended in orderto provide an individually tailored plan of care54.

The assessment and management of hydration and nutrition for persons with dementia entails a multi-disciplinary systematic approach informed by the use of a decision-making pathway, tailored to theperson’s cognitive and related communication abilities. The National Consent Policy55 states that thehealth professional who is providing the particular health and social care service is ultimatelyresponsible for obtaining the informed consent of the person for any proposed intervention. The onusis on the healthcare professional to communicate in a way that maximises the person’s participationand ability to understand the information presented and express their will and preferences.

See Discussion on CANH below and guidance documents 1, 2 and 6 for more information oncommunication and decision-making.

Guidance on nutritional assessment for persons with dementia is available from a number oforganisations21,22,31,34,40,56,57

The Health Information and Quality Authority (HIQA) in 2008, produced the National QualityStandards for Residential Care Settings for Older People58, to help improve and insure the qualityand safety of residential care. They have also recently launched guidance regarding nutrition andhydration specific to residential care services for older people and acute hospitals 21,22

Multi-disciplinary evaluation of eating, drinking and swallowing needs is an integral part of acomprehensive approach to end-of-life care59. A careful multidisciplinary approach to nutritionalassessment is necessary for both the successful diagnosis of dehydration and nutrition difficultiesand appropriate management. The assessment process should consider all situations and behaviourswhich might impact on food intake and should take a whole person approach, considering relevantpsychosocial and spiritual factors.

Care planning should therefore have a multi-disciplinary focus, including:

• The person with dementia and/or family/carers

• Medical team

• Nursing staff

• Dietitian

• Speech and Language Therapist

• Physiotherapists and Occupational Therapists

• Healthcare assistants and catering staff



Hydration Assessment

Optimal hydration in older adults is a common yet complex problem, requiring a comprehensiveapproach. Timely recognition of dehydration is essential. Dehydration occurs as a result of a low fluidintake, excess fluid loss (excessive sweating, vomiting or diarrhoea), or a combination of both21,22

Dehydration in older adults can result in reduced cognitive performance, constipation, delirium,infections, renal failure, shock, seizures, brain damage and death60

Popkin et al61 assert that a consensus on a “gold standard” for hydration markers, particularly formild dehydration is non-existent. Terminal dehydration in people who are close to death is beneficialin the sense that it reduces respiratory and gastrointestinal secretions39. Classical dehydrationsymptoms such as diminished skin turgor, increased thirst, oliguria, low blood pressure andorthostatic hypotension are less sensitive and less specific in elderly people. There is no ratifieddehydration assessment tool that we are aware of at the time of print62.

Nutrition Assessment

Undernutrition, insufficient calories, protein or other nutrients12 can lead to serious healthconsequences such as weight loss, dehydration, poor wound healing and pneumonia14. The causeof malnutrition is usually multifactorial63. Clinical assessment utilises a number of physical signs,(specific and nonspecific), that are known to be associated with malnutrition. In conjunction with a

The purpose of hydration and nutrition assessment is to:

• Identify individuals who are at risk of becoming dehydrated.

• Identify individuals at risk of undernutrition or who are malnourished.

• Develop a care plan that is appropriate and attainable to meet the person’s needs, asdefined by the assessment.

Direct methods of assessment of dehydration include:

• Variation in blood pressure measurements.

• Dryness of the tongue and mucous membranes.

• Complaints of persistent tiredness, nausea, confusion, back pain, rapid breathing, drymouth, lethargy, heartburn, muscle weakness, dizziness, headaches, dry eyes, constipation,or darker coloured urine. Substantial decrease in urinary volume and thirst.

Direct methods of nutritional assessment are often summarised as ABCD

• Anthropometric methods (e.g. body measurements such as weight, BMI)

• Biochemical, laboratory methods (e.g. full blood count, electrolytes, urea and creatinine,fasting glucose, albumin and ferritin).

• Clinical methods (e.g. detailed history, assessment tools such as MUST).

• Dietary evaluation methods (e.g. 24 hour dietary recall, Food Frequency Questionnaire(FFQ) and food records).

Section 5


nutritional history, a general clinical examination – with special attention to hair, angles of the mouth,gums, nails, skin, eyes, tongue, muscles, bones and thyroid gland should be conducted. A nutritionalassessment is an essential feature of all nutritional surveys as it is the simplest and most practicalmethod of ascertaining the nutritional status. A nutritional assessment is non-invasive and inexpensiveto perform; however, it can fail to detect early signs of malnutrition.

Nutritional assessment tools include the Mini-Nutritional Assessment (MNA)64,65 and the MalnutritionUniversal Screening Tool (MUST)66, which were developed and validated to identify malnutrition orthose at risk of malnutrition. Self report is always preferable, however this may be a significantchallenge for the person with dementia so therefore, food recall questionnaires are often administered.Dietary assessment can also be assessed by other methods. These include:

• 24 hours dietary recall

• Food Frequency Questionnaire

• Dietary history

• Food diary

– Observed food consumption

– Addressing difficulties with chewing, swallowing or self-feeding

– Assessment of behavioural and psychological symptoms

– Assessment of visuo-spatial and perceptual abilities

For the person with dementia, food recall questionnaires are usually administered to family carers orcare home staff. The choice of the most appropriate dietary method depends on clinical and cognitivefactors as well as on the information required for clinical purposes (See Guidance Area 2 forconsideration of cognitive and physiological assessment with regard to hydration and nutrition).

Poor hydration and nutrition can inevitably lead to bladder and bowel problems. To maintain bladderand bowel health, persons with dementia should be encouraged or assisted to have their preferreddrinks regularly. Adequate time should be given to consume food and drinks, and/or relativesencouraged to assist if available. There are a number of continence tools that can be used to help inthe assessment of bladder and bowel function (and many clinical settings have these in place aspart of routine/standard care). Monitoring a person’s fluid balance to prevent dehydration should becompleted using a fluid balance chart. It is the responsibility of the nurse caring for a patient to ensureobservations and fluid balance are recorded in a timely manner, with any abnormal findingsdocumented and reported to the nurse in charge/medical team67. The colour of the urine should notbe relied on as a marker of fluid balance as some medication can alter urine colour and give a falseindication of urine concentration67. Whilst it is suggested that analysis of blood chemistry may beuseful in the assessment of hydration status, the evidence surrounding this is equivocal67. Thefrequency of bowel elimination varies considerably from individual to individual. Often persons withdementia may experience faecal incontinence or constipation or both. Appropriate assessment anddocumentation of bowel elimination can inform management strategies. Persons with dementia mayexhibit changes in weight, either weight gain or weight loss, because of changes in their eating habits.Therefore a record of their weight should be documented and reviewed regularly in accordance withlocal policy.



Oral Care

Good oral health is important to maintain the enjoyment of eating and drinking. If the person withdementia is able, continue oral intake if compatible with the overall goals of care and comfort. Poororal hygiene can increase a person’s risk of developing pneumonia and has an impact on a person’sability to eat and drink68. Issues such as xerostomia, infection, oral infection or ulceration and poordentition can cause or contribute to swallowing difficulties59. The provision of effective oral care isfundamental to nursing practice and can greatly influence a person’s comfort and quality of life. Whena person is not eating or drinking, or has no appetite, it is important for the person’s mouth to feelcomfortable. Maintaining good oral hygiene is essential to improve comfort69. The person’s lips shouldbe kept moist and clean and appropriate oral care products applied if needed. To alleviate symptomsof dry mouth and thirst, mouth care should be administered.

Assessment to inform a decision regarding CANH

As outlined in Guidance Area 1 long-term use of artificial hydration and nutrition in people with end-stage dementia is not appropriate23, 24, 25 – 27, 30,31,34,50,51 and artificial feeding should not be used wheredysphagia or disinclination to eat is a manifestation of disease severity31. However, consideration ofartificial hydration and nutrition may be appropriate only if dysphagia is thought to be a transientphenomenon.

Decisions pertaining to the use of artificial nutrition vs. hydration may arise separately and the meritsof these interventions may need to be evaluated individually taking into account the person’s valuesand preferences. Health professionals commonly associate several signs and symptoms withdehydration (e.g. hypernatremia, thirst, anorexia, nausea and vomiting, fatigue and irritability) orhypovolemia (e.g. diminished skin turgor, orthostatic hypotension, and dizziness); however these maynot be highly specific in people who are terminally ill70-75. Many symptoms such as thirst, dry mouth,and fatigue are not specific to dehydration and artificial hydration is not likely to be of any benefit75.There is no evidence that hydration reduces the risk of (or worsening of) fatigue, sedation, myoclonus,or hallucinations76. There is a lack of data demonstrating the benefit of artificial hydration at the endof life and this should be explained to people with dementia and their families.

An advance healthcare directive is an expression made by a person who has capacity (in writing, toinclude voice, video recording and speech recognition technologies) of their will and preferencesconcerning treatment decisions (including CANH) in the context of an anticipated deterioration oftheir condition with loss of decision-making capacity to make these decisions and communicate themto others. An advance healthcare directive is legally binding when a person writes down whattreatments they would refuse in the future and the circumstances in which the refusal is intended toapply.

An advance healthcare directive may also designate authority to a healthcare representative tointerpret the will and preferences of the directive-maker and consent or refuse treatment based ontheir known will and preferences.

The National Consent Policy (2014)55 together with the Assisted Decision-Making (Capacity) Act201577 recognise that a person may have capacity to make some decisions and need support withother decisions.

Capacity: Legal decision-making capacity refers to a specific decision about a particular medicaltreatment that is to be made at the time it is made. A person with capacity:

• understands in broad terms the reasons for, and nature of, the decision to be made andis able to retain this knowledge long enough to make a voluntary choice.

• has sufficient understanding of the principal benefits and risks of a medical interventionand relevant alternative options, after these have been explained to them in a manner and in alanguage appropriate to their individual level of cognitive functioning.

• can communicate their choice (sometimes with the support of augmentative communicationstrategies [See Guidance 1]).

According to the Assisted Decision-Making (Capacity) Act 201577, a person lacks capacity to makea decision to consent or refuse medical treatment if they are unable to –

(a) understand the information relevant to the decision;

(b) retain the information long enough to make a free choice;

(c) weigh the information as part of the decision-making process;

(d) communicate their decision

It should not be presumed that, simply because a person lacks the capacity to make a specificdecision about a particular medical treatment or care, they do not have the capacity to make otherdecisions. Their autonomy can still be promoted through adherence to their advance plans/directivesand continued respect for their current wishes where possible.

Swallowing and Medication

Please see Guidance document 7 for guidance regarding assessment of swallowing and medication.

At the end of life

As end of life approaches, and eating and drinking difficulties become more pronounced,comprehensive nutritional screening and assessment may not be appropriate. At this stage it isimportant to ensure that nutritional assessment and screening is not overly burdensome for theindividual and that assessment focuses on symptom management and prioritising comfort.


Section 5



Guidance – Assessment of hydration and nutrition

1. A comprehensive assessment is essential on which to basemanagement plans so that the goals of care are appropriate andattainable.

2. Health professionals should identify the specific needs, arising fromdifficulties with hydration and nutrition, for the person with dementiaand their carers. Care plans should record and address these needs.

3. Refer to Dietitian for dietary advice as clinically indicated or guidedby standardised assessment tool.

4. Specialist assessment and advice concerning swallowing andassistance to eat in dementia should be available. Speech andLanguage Therapy assessment of eating, drinking and swallowingis recommended for people presenting with signs/symptoms ofdysphagia.

Guidance Area 3:

Management of Hydration and Nutrition

As outlined in Guidance Area 1, a ‘Food First’ approach is appropriate for people with dementia atall stages of the illness trajectory. Existing guidance is available to support healthcare staff in ensuringthat people with dementia receive good nutritional care, adequate hydration and a positive mealtimeexperience21,22. The information below is specific to people with advanced dementia.

Assistance with Mealtimes

The American Geriatrics Society50 and NICE guidelines30,31,34,recommend ‘careful hand feeding’ forpersons with advanced dementia. This includes efforts to enhance the experience by altering theenvironment and creating person-centred approaches to eating and drinking, with the aid of multi-disciplinary assessment (e.g. Speech and Language Therapist, Occupational Therapist, Dietitian).

Review the environment for these four negative environmental influences atmealtimes

1. Visual overstimulation in a crowded room.

2. Poor lighting.

3. Lack of visual contrast when objects/food are close together or on top of each other.

4. Auditory confusion secondary to background noise.

Managing Dysphagia and the Risk of Aspiration

As discussed earlier, the vast majority of people with end-stage dementia will experience dysphagia.

The person with advanced dementia usually presents with a combination of both physiologicalchanges to the swallow (dysphagia), and behavioural issues secondary to cognitive deficits. Althoughthe progression of swallowing difficulties may vary from person to person, the followingrecommendations from the Alzheimers Society UK78 are advocated:

• Referral to a dietitian who will work with the multi-disciplinary team to advise on the applicationof nutritional interventions or best course of action based upon evidence and careful medical,dietary and lifestyle assessment.

• Referral to a Speech and Language Therapist is a priority when people experience any difficultywith swallowing, holding food in the mouth, continuous chewing, or leaving harder-to-chewfoods (e.g. hard vegetables) on the plate.

• It is important to ensure that the person is alert, comfortable and sitting upright or, if in bed,are well positioned, before offering food and drink. People who are lying down or drowsy willstruggle to swallow safely. Advice on positioning techniques should be obtained from aPhysiotherapist and/or advice from an Occupational Therapist on aids for eating and drinking.


Section 5

• A multi-disciplinary team ought to address any potentially reversible causes of dysphagia and/ordecreased oral intake, such as constipation, pain, depression, delirium, medications and poororal health54.

• For an in-depth understanding of the roles of these disciplines in the palliative care contextplease see the HSE Palliative Care Competencies Framework 201479

The person with end-stage dementia may be unable to tolerate any consistency of food or fluidsorally without risk of aspiration, and may be unable to meet hydration and nutrition requirements orally.Careful monitoring of swallowing is therefore important. It is essential to seek Speech and LanguageTherapy assessment and advice to determine safe swallowing strategies, tailored to the individual.This may include advice on the most appropriate food and fluid consistencies, as well as strategiesfor providing assistance with eating and drinking to minimise (but not necessarily eliminate) the riskof aspiration.

CANH

The research is in clear agreement that the long-term use of artificial hydration and nutrition in patientswith end-stage dementia is not appropriate23, 24, 25– 27, 30,31,34,50,51. Finucane et al.’s23 seminal and often-cited paper set out to answer a number of clinical questions around the benefits or otherwise of tubefeeding practices for people with dementia. The authors found no evidence for benefit of feedingtubes practices in preventing aspiration, prolonging survival, improving pressure sore outcomes,reducing infection, improving functional status or improving comfort.

“There is no clear evidence that placing a PEG tube will allow patients to live longer, behealthier, do more or suffer less. The desire to place a feeding tube in a demented elderlyperson with feeding difficulties who is losing weight is based on a reasonablemisunderstanding, but in most cases it is not medically defensible...”

(Finucane, 2001:702)23

Indeed, provision of artificial nutrition and hydration can lead to increased risks/burdens, such asincreased infections, blockages, sensory deprivation of food and increased risk for restraint use53,80

Some widely assumed benefits of CANH, such as alleviation of thirst, may be achieved by lessinvasive measures including good mouth care or providing ice chips53,81. Hoefler53 states that effectivedehydration (i.e. by avoidance of artificial hydration) can lessen unpleasant symptoms such as nausea,vomiting, abdominal pain, continence issues and pulmonary secretions.

Consideration of artificial hydration and nutrition may be appropriate only if dysphagia is thought tobe a transient phenomenon30,36,39. It is again essential that the multi-disciplinary team is involved indiscussing the likely cause of dysphagia and prognosis for recovery. There should be clear goalsand a defined time-frame for use of artificial nutrition and hydration in these circumstances. It isimportant that nutritional support goals are documented in a management care plan and regularlyreviewed.

Most often in people with end-stage dementia, dysphagia is more likely to represent a marker ofdisease severity, rather than a transient difficulty. Ethical and legal principles should be applied whenmaking decisions about withholding or withdrawing nutritional and hydration support30,31,34, 59. In suchcases, the goals of care change to a focus on comfort.




Section 5

Focus on Comfort

Carefully assisting with eating and drinking should continue in the case of a person who acceptsand appears to gain enjoyment from oral intake37. It also allows the person with advanced dementiato experience continued human contact when eating and drinking. The focus on ‘comfort’ means thatfood and fluid consistencies recommended may not be those which are safest for the person withdementia in terms of minimising aspiration. For example, it may be more appropriate to recommendnormal fluids, even if there is a risk of aspiration, if the person with dementia appears to enjoy eatingand drinking without overt signs of distress. Such recommendations should be discussed by themulti-disciplinary team and clearly documented. A person may accept oral intake at some stages andnot at others. Appropriate, accurate documentation to ensure accurate reflection of the person’scircumstances should be maintained (e.g. regular updating of fluid balance charts, prescriptions etc).

Palachek recommends that the use of the term “Comfort Feeding Only” should be adopted82,however the term ‘Tastes for Comfort’ may be more appropriate, placing the person’scomfort/enjoyment as the focus of any decision-making. Research has also shown that familymembers are more satisfied when comfort is the primary goal of end-of-life care83.

Tastes for comfort, through careful hand feeding, if possible, offers a clear goal-oriented alternativeto tube feeding and eliminates the apparent care-no care dichotomy imposed by current orders toforgo artificial hydration and nutrition.

Mouth Care

1. Rinsing the mouth with water and cleansing teeth with a soft toothbrush and toothpaste isan effective oral cleansing routine that is cost-efficient and reduces the risk of oral mucositis(mouth ulcers)17

2. Access to the mouth may be improved by stimulating the root reflex – that is, stroking thecheek in the direction of the mouth84.

3. Modified dental equipment, such as a backward bent toothbrush may also be helpful inimproving mouth access.

4. Dry mouth products are more therapeutic than moistened swabs to hydrate the mouth.However, substances with a PH lower than 5.5 (acid condition; for instance, lemon andglycerine) or alcohol as an ingredient are not recommended and should be avoided84.

An Individualised Plan of Care

An individualised plan of care, endorsed by the person with dementia (concurrently or in an advancedirective), a key family member or legally designated healthcare representative or advocate, with twinobjectives of providing adequate food and fluid intake and maintaining self-feeding ability isrecommended best practice85. Such a plan may be developed by any member of the multi-disciplinaryteam. It is best practice to consult as widely as possible with the person with dementia, other clinicaland non clinical team members, carers and family members or friends, as appropriate, who mayprovide insight into the person’s specific values and treatment preferences with regard to hydrationand nutrition management. Where a person appears not to comply with the plan of care the planshould be reviewed in light of their current and past expressed wishes, their capacity to understandwhat is happening and their overall benefit.



Guidance – Management of hydration and nutrition in theend-of-life care of a person with dementia.

1. Continue careful hand-feeding assistance if the person is acceptingand appears to gain enjoyment from same. Use of the term ‘Tastesfor Comfort’ when discussing and documenting same.

2. Seek Speech and Language Therapy assessment advice on the mostappropriate food and fluid consistencies, as well as feedingassistance strategies to minimise (but not necessarily eliminate) therisk of aspiration.

3. Caregivers should have access to education and training on how bestto assist with careful handfeeding.

4. Long-term use of artificial hydration and nutrition is not recommendedfor people with end-stage dementia


Section 5

Guidance Area 4

Decision-Making – Balancing Different Views

Advanced or end stage dementia is characterised by profound cognitive impairment and inability tocommunicate verbally. Persons with dementia often encounter weight loss, dehydration, or aspiration,while family members struggle with the emotionally difficult decision to continue assisting the personto eat and drink or consider alternatives86. Families often feel unprepared and unsupported whendiscussing treatment choices for persons with dementia87,88. Furthermore, many nurses and carehome staff do not feel well prepared to deal with issues related to end of life89. Health professionalsare often faced with dilemmas in helping people with dementia meet their nutrition and hydrationneeds90. It is important that clear, consistent and independent evidence-based advice is provided tosupport decision-making with regard to hydration and nutrition for people with dementia. Advancedeating and swallowing difficulties need to be considered in the context of holistic palliative end-of-life care20. Communication and assisted decision-making are key factors, and having trust in doctorsand surrounding staff is essential for people with dementia and caregivers20,91.

CANH is a medical treatment48 and, like other medical treatments, it is associated with both burdensand benefits, depending on an individual person’s circumstances. This can lead to ethical dilemmasand difficult decision-making situations in practice. Decisions therefore regarding the introduction ofclinically-assisted nutrition should always be considered on an individual basis35.

The role of CANH in advanced dementia is often misunderstood. Arguments founded on obligationsof maintaining optimum hydration and nutrition are thrust against arguments around the perceivedbenefits, risks and burdens of CANH in this group92. Furthermore criticisms arise not only from therisks associated with dysphagia but also on the lack of evidence of favourable outcomes from enteralnutrition93.

Important issues to address in a multi-disciplinary discussion include:102

• Severity of the person’s dysphagia

• The person’s current nutrition and hydration status

• The person’s food/fluid/ mealtime preferences (including any previously expressed wishesaround nutrition and hydration at end of life)

• Discussion of the benefits and risks/burdens of artificial nutrition and hydration

• Discussion of the benefits and risks/burdens of continued oral feeding and assistance

• Treatment plan in case of further deterioration in medical status (e.g. aspiration pneumonia)

• The person’s ceiling of care, including the issue of transfer to acute hospital

When tube feeding replaces oral feeding on a long-term basis, people are deprived of the taste offood and the opportunity for contact with caregivers while eating39,83. Although healthcareprofessionals may be aware of the risks associated with tube feeding, they may feel compelled byinstitutional, societal or legal pressures to intervene94,95. Nasogastric (NG) tubes are usually usedfor very short periods of time (1-3 days). However, such tubes are often quite uncomfortable andcan be complex to manage, therefore where a longer duration of artificial nutrition is indicated,



Percutaneous Endoscopic Gastrostomy (PEG) or jejunostomy feeding tubes (J-tubes) arepreferred47.

Whilst there are a number of perceived benefits associated with artificial nutrition, existing evidencesuggests that artificial nutrition rarely achieves its intended clinical goals in people with advanceddementia48, and tube feeding (enteral nutrition) is not effective in terms of prolonging survival,improving quality of life, providing better nourishment or decreasing the risk of pressure sores40,96.

The research is in clear agreement that the long-term use of artificial hydration andnutrition in people with end-stage dementia is not appropriate23, 24, 25–27, 30,31,34,50,51.

Guidance: Decision-making on the appropriatemanagement of hydration and nutrition issues in the end-of-life care of a person with dementia.

1. Develop and agree a decision-making pathway to ensure multi-disciplinary assessment and discussion takes place.

2. Information must be given to the person with dementia (if appropriate)/family/caregivers in a balanced manner, outlining feeding practicesand benefits/burdens of each method.

3. Ensure all members of multi-disciplinary team, including person withdementia if appropriate/family/carers, receive verbal and writtendocumentation regarding decision made and implications of same.


Section 5

CASE STUDY 1

Chioma Matthews lives in a residential care setting for older people. Shehas vascular dementia and has been admitted to hospital with aspirationpneumonia.

Chioma is dependent on staff in the residential care setting to assist with all her activitiesof daily living. She requires assistance to eat a smooth purée diet and drink thickenedfluids, and has little verbal communication. Chioma has been attending the Speech andLanguage Therapist (SLT) in the community clinic for the last four months.

Following her admission, Chioma was assessed by the SLT in hospital and found to beat high risk of aspiration on all consistencies of food and fluid. After a multi-disciplinaryteam (MDT) discussion it was concluded that Chioma’s swallowing problems could beattributed to advancing dementia. Further to a functional assessment of Chioma’scapacity to make a decision about oral intake and artificial nutrition, the MDT confirmedthat Chioma lacked the capacity at that time to make such a decision and agreed thatartificial nutrition would not be appropriate.

The reasons for Chioma’s swallowing problems were explained to her daughter and therisks and benefits of artificial nutrition discussed. It was decided by all that Chiomashould receive food and fluids at the safest possible consistency when she was awakeand alert enough to receive them, acknowledging that this was not likely to meet hernutritional and fluid requirements and she would remain at high risk of aspiration.Chioma’s family are very concerned that she is not eating.

Planning future care

Upon recognition of her eating difficulty, a physician completes a medical evaluation ofChioma in consultation with members of the MDT (e.g. Nurses, Occupational Therapist,Physiotherapist, SLT (community and inpatient) and Dietitian). This evaluation includesa careful history, obtained from staff and family if necessary to include physicalexamination, swallowing observation and medication review. Evaluation focuses ontherapeutic interventions that may alleviate Chioma’s swallowing difficulties. Specificinterventions include altering the texture, cohesiveness, viscosity, temperature, anddensity of Chioma’s food97; changing her posture while eating98,99; environmentalmodifications 99-100; denture adjustment and medication adjustment. These interventionsshould be reviewed regularly’. This assessment informs the care plan for Chioma’smanagement of hydration and nutrition.



When artificial nutrition is ruled out, the alternative option is a risk-managed approach.This means that every effort is made to minimise the risk of aspiration - however, due tothe severity of the eating and/or swallowing problem, it is not possible to eliminate theserisks entirely. Palacek et al82 refer to this approach as ‘comfort feeding only’, (CFO) whichmeans that the person with dementia is helped to eat and drink orally but this stopswhen it becomes distressing for the individual. We refer to this as ‘tastes for comfort’.Eating and drinking should be comfort orientated and based on a personalised eatingand swallowing care plan for that individual. CFO is envisioned as functioning foremostas a care order, detailing the care received during mealtimes and documenting thedecision not to use a feeding tube, ‘tastes for comfort’ allows for greater patient orsurrogate empowerment in advance care planning. Ideally, this discussion should takeplace in the context of a previously established advance care plan, in which the personwith dementia’s condition and prognosis have been addressed before discussion of‘tastes for comfort’ occurs.

A person-centred approach

In the case of Chioma it is important to review her previously stated wishes regardingtube feeding, if any, and to discuss the benefits and burdens of tube feeding with herfamily, any legally designated healthcare representative or other carers. If Chioma hasan advance healthcare directive that clearly applies to the current circumstances, thenthe MDT are legally bound to respect her wishes.

Where there is an advance directive but there is ambiguity as to its meaning orapplication; then health professionals should consult Chioma’s designated healthcarerepresentative (if any) or those who are significant in her life who may be able to interpretthe advance directive and/or offer insights as to her values and beliefs. Where ambiguitypersists, the opinion of a second health professional should be sought. Throughoutthese deliberations Chioma should be the focus of concern:

‘[A]ct at all times in good faith and for the benefit of the relevant person.’ (AssistedDecision-Making (Capacity) Act 2015 Pr.2 S.8(7)(e))77

A palliative approach

As part of the advance care planning discussion, healthcare professionals educate familymembers about the burdens and benefits of feeding tubes, ascertain whether the personwith dementia has preferences for the use of artificial hydration and nutrition, and makerecommendations. Written guidelines to support healthcare professionals in makingdecisions about artificial nutrition in people with advanced dementia enables thosewithout specialist knowledge of dementia to access information on best practice andthe resources available locally to support them.

CASE STUDY 1


Once a diagnosis of advanced dementia has been confirmed and an acute reversiblecause of the swallowing problem ruled out, a meeting with the MDT, significant familymembers and community representatives, for example, care home staff, whereappropriate, should be held to formulate a written plan for future care. This plan shouldinclude the ceiling of treatment and intervention for eating or swallowing problems,including a plan of care in case of aspiration. Such a plan can be developed by anymember of the multidisciplinary team.

Open communication and shared decision-making are key factors essential for peoplewith dementia and caregivers20,92. Families can place pressure on professionals aroundthe need to feed and hydrate a person out of their sense of care. The professional mustalways address family concern in the context of the person’s will and preferences aswell as best evidence in practice and judge accordingly, moving to a palliative focus ofcare if appropriate.

Ongoing goal orientated assessment and reassessment

According to an individualised care plan, Chioma should be ‘tastes for comfort’ regularly,with cessation of oral feeding when she begins to show signs of distress (e.g. choking,coughing). Feeding assistance is comfort oriented in that it is the least invasive andpotentially most satisfying way of attempting to maintain nutrition through careful handfeeding. As designed, ‘tastes for comfort’ provides an individualised care plan statingwhat nursing home staff will do to ensure the comfort of the person with dementia duringassistance with feeding, if possible. Her individualised care plan should documentunique signs of distress, which behaviours indicate it is safe to offer food, what types offoods are preferable, effective feeding techniques, and at what times of day food ispreferable.

When Chioma no longer tolerates oral feeding, the nursing home staff provide analternative means of positive human interaction, in lieu of comfort feeding, for theremainder of the meal period. Interaction may involve speaking to her and therapeutictouch, which carry a range of benefits for people with dementia.

CASE STUDY 1

Section 5


Useful Resources

1. NICE Guidance

The NICE Guideline (www.nice.org.uk) modified March 2015, summarises the key recommendationsas follows:

• People with dementia should be encouraged to eat and drink by mouth for as long as possible. • Specialist assessment and advice concerning swallowing and feeding assistance in dementia

should be available. • Dietary advice may also be beneficial. Nutritional support, including artificial (tube) feeding

practices, should be considered if dysphagia is thought to be a transient.• Artificial feeding should not generally be used in people with severe dementia for whom oral or

orophageal dysphagia or disinclination to eat is a manifestation of disease severity.

2. GSF Prognostic Indicator Guidance (UK)

This guidance aims to clarify the triggers that help to identify people who might be eligible for inclusionon the supportive/palliative care/ GSF/ locality registers. Once identified and included on the register,such people may be able to receive additional proactive support, leading to better co-ordinated carethat also reflects people’s preferences.

http://www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf

3. Alzheimer’s Society (2012). My life until the end: Dying well with dementia.

This report provides a broad overview of the key issues relating to end of life planning and end of lifecare as experienced by people with dementia. The report summarises existing evidence and presentsnew evidence from current carers, bereaved carers and people with dementia. It makesrecommendations about planning for end of life and to improve co-ordinated care through to the endof life.

http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1537

4. Royal College of Physicians and the British Society of Gastroeneterology. (2010). Oralfeeding difficulties and dilemmas: A guide to practical care, particularly towards the endof life. London: Royal College of Physicians59.

This report summarises the mechanism of oral feeding, its assessment and the modification of foodand liquid to facilitate maintenance of oral nutrition as well as the consequences of cessation ofintake of nutrition. Feeding difficulties can arise in patients with dementia at an earlier stage or atend of life. These difficulties are discussed and principles of practical management are provided.

www.nice.org.uk



http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1537

5. A summary of healthcare organisations with similar views on feeding tube placementat end of life is available in Schwartz et al101.

This resource presents the use of a patient-centred interdisciplinary process by applying core ethicalprinciples to a case study involving nutrition support.

6. Alzheimer’s Association Campaign for Quality Residential Care: Dementia CarePractice Recommendations for Assisted Living Residences and Nursing Homes. Phase 3:End-of-Life Care.

These practice recommendations are designed to improve the dying experience for people withdementia and build upon recommendations developed by the Alzheimer’s Association in Phases 1and 2 of Dementia Care Practice Recommendations for Assisted Living Residences and NursingHomes. The earlier recommendations focus on many relevant areas of care, including the basics ofgood dementia care, food and fluid intake, social engagement, pain management, falls, wanderingand restraints. The recommendations included in Phase 3 offer suggestions for addressing issuesunique to people with dementia at the end of life

https://www.alz.org/national/documents/brochure_dcprphase3.pdf

7. Fact Sheet: Irish Nutrition and Dietetic Institute

This information is designed to help people understand the effects of dementia on appetite, eatingand drinking, and to help people manage some of these difficulties.

https://www.indi.ie/fact-sheets/fact-sheets-on-nutrition-for-older-people/516-feeding-strategies-in-dementia.html

8. Food fortification and variation on methods of assessment are provided by theBuckinghamshire Healthcare NHS Trust, Aylesbury Vale CCG, Chiltern CCG.

This link provides Healthcare professionals/care guides to end of life & nutrition, food first-eating wellfor small appetites, food first-fortifying food for care homes, MUST How to complete, MUST How tocomplete alternative measurements, MUST How to treat, Sips and Food Comparison.

http://www.bucksformulary.nhs.uk/docs/avc/

9. Care of Patients with Dementia Policy-A Flowchart for Patients with Dementia.

This Nutritional Flowchart for Patients with Dementia from Mid Essex Hospital is included to guidethe management for people with dementia who are not eating and drinking adequately.


Section 5

https://www.alz.org/national/documents/brochure_dcprphase3.pdf



http://www.bucksformulary.nhs.uk/docs/avc/


• Malnutrition Universal Screening Tool (MUST) assessed within 12hours of admission to hospital and completed

weekly or more frequently for those at risk. Eating and Drinking Assessment. • Research background nutritional history; e.g. ‘This Is Me’, weight history, dietary habits, likes/dislikes, usual food

portions, assistance required with meals, *religious beliefs/needs? *Consider patient’s ability to communicate. POINT 2 - IDENTIFY & ADDRESS UNMET NEEDS: Rule out constipation, impact of Medication, pain, surgery, nausea, oral health, infection, dentures, positioning, minimise distractions, depression. Treat delirium (refer to Delirium Pathway for Guidance). POINT 3 - COMMENCE INITIAL INTERVENTIONS: Monitor food/fluid intake accurately. Monitor amount of weight loss (weekly weights). Offer relatives mealtimes with the patient & open visiting. Consider food fortification, snacks and finger foods. Use ‘Red Tray System’. Use coloured cups and plates. Review medication. Encourage to eat meals sitting in chair.

POINT 4 – REFER TO RELEVANT PROFESSIONALS AND COMMENCE SECONDARY INTERVENTIONS: Consider referrals to Dietitian, Dementia Specialist, Nutrition CNS Consultant Geriatrician with specialist interest in Dementia. Consider oral nutritional supplements. Consider if there may be a swallowing problem & if so refer to SALT and identify if texture modification is indicated. POINT 5 – IF ORAL INTAKE INSUFFICIENT AND THERE IS AN ADDITIONAL ACUTE ILLNESS THAT MAY IMPROVE WITH TREATMENT? Determine if IVI required. Consider if there is any potential for recovery i.e. does the patient have an illness that may improve with treatment? POINT 6 - COMPLETE MCA2 AND DETERMINE IF NON-ORAL FEEDING TRIAL IS APPROPRIATE: Best Interests decision should include all relevant members of MDT (Drs, Nurses, SALT, Dietitian, Dementia Specialist and Nutrition CNS), relatives and the patient’s current and previous wishes, spiritual wishes & consider re-feeding syndrome. Please note that a MDT meeting is not necessary (particularly if this delays decision making) as the decision maker can ascertain the views of others individually. Consider DoLS if it is anticipated the patient may struggle to tolerate NG feeding. Consider mittens and 1:1 nursing.

POINT 7 - COMPLETE NON-ORAL FEEDING TRIAL AND MONITOR FOR IMPROVEMENT: Refer to Nutrition CNSand Dementia Specialist. If patient’s condition continues to deteriorate consider MCA2 to withdraw active treatment if no reversible illness. POINT 8 - CONSIDER LONG TERM NON-ORAL FEEDING IF TRIAL SUCCESSFUL: Only applicable if the patient consents or if she/he lacks capacity and it can be evidenced this is deemed to be in the patients’ best interests. Refer to Nutrition CNS. POINT 9 - CONFIRM POOR ORAL INTAKE IS SOLELY RELATED TO DISEASE PROGRESSION: If it can be evidenced that there are no reversible illnesses and there are concerns regarding mental capacity, complete MCA2 regarding withdrawal of treatment and inform patient and family of poor prognosis. Consider palliative discharge. Refer to Dementia Specialist. Establish and agree new baseline with MDT, patient and family - if there are concerns regarding mental capacity consider MCA2 regarding ceiling of treatment if inadequate oral intake. POINT 10 - COMPLETE MCA2 AND DETERMINE IF NON-ORAL FEEDING IS INAPPROPRIATE: Best Interests decision should include all relevant members of MDT (Drs, Nurses, SALT, Dietitian, Dementia Specialist and Nutrition CNS), relatives and the patient’s current and previous wishes, spiritual wishes. Ceiling of treatment established. POINT 11 - FOR PATIENTS WITH IDENTIFIED SWALLOWING DIFFICULTIES CONSIDER AT RISK EATING AND DRINKING AND IMPLEMENT PROTOCOL: Consider safest ‘at risk’ feeding recommendations & optimise intake, e.g. finger foods, food fortification, full fat milk POINT 12 - AGREE NUTRITIONAL SUPPORT PLAN & DISSEMINATE TO COMMUNITY STAFF: Ensure all decisions made (including MCA2 if appropriate) are recorded on discharge summary and a copy of MCA 2 is provided to community SALT, Dietitian, Matron and District Nurse.

Section 5


Section 6 6

ADDITIONAL RESOURCES

6.1 Understanding the progression of dementia

When considering hydration and nutrition for a person with dementia, it is important to understandthe progression of the condition and consider it’s effect on the person’s memory, ability to makedecisions and to eat and drink independently.

Whilst many classification systems exist to grade the severity of the dementia such as the GlobalDeterioration Scale for Assessment of Primary Degenerative Dementia (GDS) (also known as theReisberg Scale)103 and the FAST - Functional Assessment Staging104 the Clinical Dementia Rating(CDR) Scale105,106 is considered to be the most widely used staging system in dementia research.Here, the person with suspected dementia is evaluated by a health professional in six areas: memory,orientation, judgment and problem solving, community affairs, home and hobbies, and personal careand one of five possible stages (0-3) of dementia is assigned (see below).

CDR-0 No dementia

CDR-0.5 Mild Memory problems are slight but consistent; some difficulties with time and

problem solving; daily life slightly impaired

CDR-1 Mild Memory loss moderate, especially for recent events, and interferes with daily

activities. Moderate difficulty with solving problems; cannot functionindependently in community affairs; difficulty with daily activities and hobbies,especially complex ones

CDR-2 Moderate More profound memory loss, only retaining highly learned material; disoriented

with respect to time and place; lacking good judgment and difficulty handlingproblems; little or no independent function at home; can only do simple choresand has few interests.

CDR-3 Severe Severe memory loss; not oriented with respect to time or place; no judgment

or problem solving abilities; cannot participate in community affairs outsidethe home; requires help with all tasks of daily living and requires help withmost personal care. Often incontinent.

The Clinical Dementia Rating Scale105,106


Section 6

Progression of Dementia

Three important influences on the life-span of dementia are the type of dementia, the stage ofdementia, and whether the course of deterioration is rapid or slow.58,107.

Life expectancy of the person with dementia

Although dementia is a progressive, life limiting and an incurable condition, it is not possible to clearlypredict a person’s life expectancy and this uncertainty can be very challenging for the person withdementia and their relatives/friends.

Although, specific life expectancy cannot be provided, there are some indicators below thathealthcare staff can provide on the probable life expectancy of the person:

• 4.5 years post diagnosis is the average survival time for a person living with dementia108.However, some people can live for 20 years post diagnosis.

• Half of the people with late stage dementia will die within 1.3 years58.


Dementia alters dietary habits and a person with dementia may developproblems eating, drinking and swallowing. Challenges may also arise fromforgetfulness and food habits that can disrupt dietary intake, eating and drinkingroutines. As the condition progresses, people with dementia may experience:

• Visual agnosia (e.g. difficulty recognising utensils and their function)

• Oral tactile agnosia (e.g. reduced recognition of or sensitivity to food/drink in themouth)

• Apraxia for eating or swallowing (e.g. difficulty bringing food/fluid to the mouth &initiating chewing & swallowing)

• Behavioural difficulties with eating/drinking (e.g. holding food in the mouth,overfilling the mouth)

• Dysphagia (difficulty swallowing) & aspiration (food/drink ‘going down the wrongway’ and entering the airway)

• Need for assistance at mealtimes

• Weight loss and cachexia

• Malnutrition

• Dehydration

• Problems with oral health (e.g. dry mouth, ill-fitting dentures)

The person with dementia will communicate hunger and thirst in different ways and thisis often subtle and needs people to know the person well to read these communicativesignals. Continuity of care and consistency is a key part of good dementia care.

Eating and drinking can be difficult

Nutrition & Hydration –Issues in Dementia Palliative Care

Dyspraxia/agnosiaUnable to useutensils, inability todistinguish food fromnon-food, walks awayfrom table.

ResistanceTurns head away,blocks mouth withhands, bitesassistant, spits orthrows food.

Oral neuromuscularincoordinationWill not open mouth, continuoustongue or mouth movementspreventing ingestion, chewswithout swallowing

Selective behavioursPrefers or will only eatparticular types of food,flavours or consistencies,including, sometimes,fluids only.

Aversive feeding behaviours

This factsheet has been developed based on Irish Hospice FoundationDementia Palliative Care Guidance Document No 4. Management ofHydration and Nutrition. Available from www.hospicefoundation.ie

Sources: Prince, M., Albanese, E., Guerchet, M., & Prina, M. (2014). Nutrition and Dementia: a review of available research (Doctoral dissertation, N/A Ed. London: Alzheimer's Disease International). https://www.alz.co.uk/nutrition-reporthttp://www.kcl.ac.uk/ioppn/depts/hspr/research/cgmhpcr/Projects/GlobalObservatoryforAgeingandDementiaCare.aspx

FACT SHEET 4A 4B 4C 4D 4E 4F


Think Food First

• Find out what the person’s food preferences were and encouragethese foods and fluids. Some people with dementia develop a markedpreference for sweet foods so these may be more appetising to theperson than savoury foods.

• Ensure appropriate food and fluids are easily available throughout the day and nightso that the person with dementia can be encouraged to eat and drink wheneverhe/she is most alert.

• If a person with dementia frequently wakes at night it is worth considering whetherhe/she is waking because of hunger.

• Encourage food and fluids little and often. Many elderly people (with or withoutdementia) do not have a large appetite, and nutritional needs are more likely to bemet via six or so small meals and snacks per day rather than three bigger meals.

• Encourage higher calorie foods and drinks. Avoiding high fat and high sugar foods atthis stage is unlikely to be beneficial to health and may increase the risk ofmalnutrition. People at risk of malnutrition should therefore generally avoid low fat, lowsugar, low calorie and diet foods and drinks.

• Consider food fortification (e.g. dried milk powder can be added to milk for cereal ordrinks, custard, porridge, yogurt, milk puddings, cream soups, mashed potato etc.)There are many other simple ingredients which can be used to fortify food and drinks.

Where a person has advanced dementia, he/she may have problems swallowing(dysphagia). In such cases, the goals of care change to a focus on comfort.

The research is in clear agreement that the long-term use of artificial hydration andnutrition in people with end-stage dementia is not appropriate.

Ethical and legal principles should be applied when making decisions about withholdingor withdrawing nutritional and hydration support.

Good communication with the person with dementia and their family isimperative. It is important that information is provided in a coordinated mannerensuring that the person’s preferences are elicited and respected as an importanttarget for improving the quality of care of persons with advanced dementia.

What about Clinically Assisted Nutrition and Hydration?

An individualised plan of care, endorsed by the person with dementia, akey family member or advocate, with twin objectives of providingadequate food and fluid intake and maintaining self-feeding ability isrecommended best practice




• People with dementia may communicate hunger or thirst differently.• The person may have reduced appetite and may prefer smaller volumes moreoften.

• Various assessment methods can inform the hydration and nutritional status.• Nurses have a key role in the provision and monitoring of nutrition andhydration.

Regular multidisciplinary assessment and reassessment is vital

Hydration and Nutrition for the end-of-life care of a person with dementia

Nutrition can be assessed by:

Dietary evaluation methods (e.g. 24 hourdietary recall, food frequency questionnaireand food records).Body measurements such as weight or BMIBiochemical, laboratory methods (e.g. fullblood count, electrolytes, urea and creatinine,fasting glucose, albumin and ferritin).Clinical methods (e.g. detailed history,assessment tools such as fluid balance chart,MUST, MNA).

Hydration can be assessed by:

Variation in blood pressure measurements.Dryness of the tongue and mucousmembranes.Complaints of persistent tiredness, nausea,confusion, back pain, rapid breathing, drymouth, lethargy, heartburn, muscleweakness, dizziness, headaches, dry eyesor constipation.Substantial decrease in urinary volume andthirst

Oral feeding assistance can be enhanced by altering the environment and creatingperson-centred approaches to eating and drinking, with the aid of multi-disciplinaryassessment. Careful hand feeding assistance should continue when a person acceptsand appears to gain pleasure from oral intake.

Refer if necessary to• Speech & Language Therapy for assessment

of swallow and advice on appropriate food anddrink consistencies.

• Occupational Therapy for assessment andrecommendation of environmental changesand equipment.

• Clinical Nutrition for dietary advice.• Physiotherapy for advice on seating and

posture when eating.

Review the environment for these fournegative environmental influences atmealtimes 1. Visual overstimulation in a crowded room.2. Poor lighting.3. Lack of visual contrast when objects/food

are close together or on top of eachother.

4. Auditory confusion secondary tobackground noise.




Oral Health

Often at the end of life care of a person with dementia may develop dental disease indirectly as a result of his/her dementia, this is associated with a loss of awareness of oral health measures.Subsequently, when a person is not eating or drinking, or has noappetite, it is important for the person's mouth to feel comfortable.

Assessment and management of eating difficulties in people withdementia is aimed at optimising oral intake as safely as possible inorder to preserve the pleasure and necessity of eating and drinking.

6 steps to maintain oral health of a personwith dementia.

Conduct an assessment of the mouth in a good light (forexample, using a hand-held pen torch) to provide a baselinefor routine oral care.

Clean the mouth with water-moistened gauze and protectwith a lubricant to minimise the risk of dry, cracked anduncomfortable lips.

Some people will need assistance in brushing and denturecare.

If person has dentures, ensure dentures are stored inoptimal solution and fit appropriately.

Clean dentures with individual brush under running waterover a sink of cold.

Adequate oral health care is carried out preferably afterevery meal and before bedtime every night.

1

2

3

4

5

6




What is dysphagia?

Dysphagia is the medical term used to describe difficulty with eating, drinking andswallowing. This includes swallowing food and fluids, as well as swallowing saliva andmedications.

Dysphagia may range from a mild problem (difficulty only with certain foods, forexample) to a more severe problem (inability to safely swallow any food or fluids).

Is dysphagia common in dementia?

Research shows that dysphagia is very common in dementia, especially in the laterstages. 90% of people with dementia experience swallowing difficulties in the final threemonths of their life.

Dementia can affect many different aspects of mealtimes.

• Memory and concentration: A person with dementia may forget to eat, or forgetthat there is food in their mouth and that they need to swallow. The person may forgetto chew, or may hold food in their mouth. The person may talk with food still in theirmouth – this puts them at risk of choking (having the food ‘go down the wrong way’).

• Perception/agnosia: The person may have difficulty recognising food or drink, orutensils such as plates and cutlery.

• Motor difficulties: The person may have difficulty with coordination and being ableto use cutlery.

Medications may also cause dry mouth, making swallowing more difficult.

As we age, our swallow changes.

• We may experience reduced smell and taste, which can affect appetite.

• Reduced saliva makes it more difficult to chew food.

• Reduced muscle strength means food takes longer to swallow.

Eating, Drinking & Swallowing Difficulties in DementiaAdvice for Healthcare Professionals

Hydration and Nutrition for the end-of-life care of a person with dementia




Section 6

DroolingDifficulty chewing foodCoughingChokingFacial GrimacingRed faceWatery eyesIncreased ‘chestiness’ after eating/drinkingWet/gurgly/husky voiceFood residue remaining in mouthIncreased respiratory rate during/aftereating & drinkingUnexplained weight lossTemperature spikesRepeated chest infectionsPneumonia

Tendency to eat rapidly/impulsively

Talking while eating

Agnosia – difficulty visuallyrecognising food

Pica – eating non-food items

Biting on utensils

Tongue thrusting

Pocketing food in cheeks or holdingfood in mouth

Spitting out food, difficulty dealingwith ‘lumps’ in food

Always following the individualised advicegiven by a Speech & Language TherapistThe person should be awake and fully alertfor all oral intake.The person should ideally be seated 90°upright, in midline position, as much aspossible.Try to minimise distractions to help theperson concentrate on their meal. Turn offthe television or radio. Tell the person what is happening, and whatfood/drink the person is having. (‘Hello Mary,it’s breakfast time. Let’s try some of yourporridge’). If feeding the person, give small sips/spoonfuls/ bites, one at a time.

Never try to force-feed a person who isrefusing oral intake.Check that the person has swallowedbefore giving the next sip/spoonful/bite.Stop feeding if the person becomesdrowsy, slower to swallow or short ofbreath.Always check the person’s oral cavity forresidue after eating.Perform oral hygiene after all intake tominimise the risk of aspirating bacteria inoral secretions.Ensure the person remains upright for aminimum of 30 minutes after oral intake,to decrease the risk of reflux and potentialaspiration of same.

Eating, Drinking & Swallowing Difficulties in Dementia Advice for Healthcare Professionals

Essentials when feeding a person with dementia and dysphagia

Signs/Symptoms of Dysphagia Feeding behaviors which may increase risk of aspiration indementia




Section 7 7

CONCLUSION

This document seeks to provide professional caregivers of people with dementia, regardless of caresetting, with evidence-based guidance on best practice in relation to the assessment andmanagement of hydration and nutrition for a person with dementia throughout their dementia journey.

The management of hydration and nutrition for persons with dementia is complex. Therefore, it shouldentail a multi-disciplinary systematic assessment and the use of a decision-making pathway.Strategies to support a person to eat and drink should be considered based on the needs,preferences and wishes of the person with dementia. End stage dementia frequently leads to triadof conditions involving anorexia, dysphagia and weight loss. Finucane et al23 and others show thatthis ‘triad of conditions’ is not addressed by insertion of a PEG.

Studies on the effect of parenteral nutrition in people with dementia are limited108. There areconflicting results from systematic reviews pertaining to treatment decisions around CANH andpeople with dementia. The decision to start artificial nutrition is often a difficult, emotional andcontroversial decision. Divergent views exist in relation to CANH in people facing the end of life,including those with dementia. Advocates for and against CANH often agree that the mostcompassionate and humane option is hospice and palliative care. Such divergence in views can leadto ethical dilemmas and difficult decision-making situations in practice. It is therefore useful for adecision-making framework, as proposed in this guidance document, to be utilised and theoverarching principles of advance care planning, maintaining comfort, engaging in assisted decision-making and on-going assessment considered. Communication and education are vital in the area ofhydration and nutrition and the MDT should be utilised to its full potential in decision-making asnecessary whilst taking due consideration to the wishes of the person with dementia.

APPENDIX 1

STEERING AND PROJECT GROUP MEMBERSHIP

Guidance Documents Project Lead: Dr. Alice Coffey

Guidance Documents Project Researcher: Dr. Kathleen McLoughlin

Principal Investigator for Hydration and Nutrition Document: Dr. Irene Hartigan

Authors: • Dr. Irene Hartigan, Lecturer in Nursing, Catherine McAuley School of Nursing & Midwifery, University

College Cork.• Sheila Robinson, Senior Speech & Language Therapist, Cork University Hospital. • Mary P. O’Sullivan, Clinical Development Co-Ordinator affiliated to Nurse Practice Development

Unit, Cork University Hospital.• Dr. Kathleen McLoughlin, Research Project Associate, University College Cork.• Dr. Paul Gallagher, Consultant Geriatrician & Senior Lecturer, School of Medicine, University College

Cork.• Dr. Suzanne Timmons, Senior Lecturer Clinical Gerontology & Rehabilitation, University College

Cork.

Draft documents were reviewed by the following international and national subject experts:

International Reviewer:Professor David H Alpers, M.D. Washington University School of Medicine

National Reviewer:Claire Molloy, MINDI, Senior Dietitian, Department of Nutrition and Dietetics Milford Care CentreLimerick.

Steering CommitteeThe outputs from the Project Group were overseen by a Steering Committee convenved by The IrishHospice Foundation comprising of:

1. Prof. Geraldine McCarthy, Emeritus Professor, University College Cork and Chair South/SouthWest Hospitals Group.

2. Dr. Ailis Quinlan, former member of National Clinical Effectiveness Committee (NCEC).3. Ms. Marie Lynch, Head of Healthcare Programmes, Irish Hospice Foundation.4. Prof. Cillian Twomey, Geriatrician (Retired).5. Ms. Kay O’Sullivan, Lay Representative, Marymount Hospice, Volunteer Support.6. Ms. Mary Mannix, Clinical Nurse Specialist Dementia Care, Mercy University Hospital, Cork.7. Prof. Philip Larkin, Director of the Palliative Care Research Programme, School of Nursing and

Midwifery, University Collge Dublin.8. Dr. Bernadette Brady, Consultant in Palliative Medicine, Marymount Hospital & Hospice, Cork.


Areas for guidance

APPENDIX 2

METHODOLOGY

The process for developing this guidance document is outlined as follows:

1. The IHF project advisory group issued a tender for the development of a suite of four guidancedocuments. A project team, led by Dr. Alice Coffey, UCC, successfully tendered to develop thisguidance document (See Appendix 1 for membership of the team). A Steering Committee wasestablished by the IHF to oversee the development of this guidance document (See Appendix 1for membership of the group). Drafts of the guidance document were reviewed byinternational/national subject experts (See Appendix 1 for details).

2. A literature review was conducted using scoping review methodology.109,110

DATABASES SEARCHED

EBSCO Database

Medline

CINAHL Plus with Full Text

Academic Search Complete

Psychology and Behavioural Sciences Collection

SocINDEX

PsycINFO

PsycARTICLES

EMBASE

The Cochrane Library



SEARCH STRATEGY

The following key word strategy was agreed by the project team and used in EBSCO, adaptedvariations were developed for the other databases:

S1: palliative OR dying OR “end of life” OR “end-of-life” OR hospice OR terminal* OR “end-stage” OR “end stage” OR chronic OR “advanced illness” OR “advanced life limiting illness” OR“advanced life-limiting illness” OR “advanced life limited illness” OR “advanced life-limited illness”OR “late stage”

S2: Dementia OR Alzheimer* OR demented

S3: Guideline* OR guidance OR algorithm* OR “decision aid” OR pathway* OR policy ORpolicies OR protocol* OR standard* OR checklist* OR Decision N3 (aid OR aids OR supportOR tool OR tools OR system OR systems OR making) OR Standard N3 (care OR clinical ORtreatment) OR care N3 model OR framework OR flowchart

S4: Appetite OR Aspirat* OR ‘Body weight’ OR ‘Body mass index’ OR ‘Biochemical markers’OR Calori* OR Dehydrat* OR Diet* OR Drink* OR Dysphagia OR Enteral OR gastrostomy OR‘Energy Intake’ OR feed* OR Food* OR Fluid* OR Nutrition* OR malnutrition OR hydrat* OR‘Naso gastric tube’ OR nourish* OR Insufficien* OR modif* OR parenteral OR ‘Percutaneousfeeding’ OR PEG OR Starv* OR Swallow* OR Thirst* OR ‘Weight loss’ OR ‘Water’ OR ‘Voluntaryrefusal’

S5: S1 AND S2 AND S3 AND S4

References from relevant papers were scanned to identify additional papers as necessary.

Records retrieved were divided into three groups “Yes”, “Maybe” and “Reject”. A second and thirdscreening of the “Yes” and “Maybe” folders was conducted to produce a final list for full-textreview. Only papers satisfying the criteria above were included for data extraction. Where there wasa disagreement regarding inclusion of a record, a third reviewer was consulted.

EXCLUSION CRITERIA

Written in a language other than EnglishConference abstracts, thought pieces, reflectivearticles, dissertations, book chapters and bookreviews.Focus on populations under 18 years of ageStudies with a purely biochemical focusAnimal/lab based studiesPapers generic to older peopleMixed Populations e.g. Parkinson’s and Dementiawhere data/ themes relating to dementia could notbe separated from other diseasesNot in English.

INCLUSION CRITERIA

English language

Peer reviewed publication

Focus on adult populations(patients /family caregivers)with dementia

Studies published between2005-2015

Section 7


Appendix 2

LITERATURE WAS REVIEWED TO CONSIDER:

The volume and level of evidence available.Theoretical models or principles proposed.Instruments and procedures to assess manage and review patients with regard to assessmentand management of hydration and nutrition in dementia palliative care.Evidence specific to a variety of care settings.Recommendations for practice.Gaps in current knowledge, relevant research in progress and key emerging issues.

Based on the review of full text papers, data was extracted onto a table, organised under the followingheadings, to aid thematic analysis:

(1) Title of Paper(2) Authors(3) Year of Publication(4) County of Origin(5) Level of Evidence (6) Aim(7) Setting (Primary Care / Residential Care Setting / Hospital / Hospice/Other (specify)(8) Population – Patients - to include age profile; comorbidities; classification of stage ofdementia (against the CDR scale) / Family caregivers / Healthcare Providers (9) Focus on: Assessment / Treatment / Review / Other (10) Reference to other pre-existing guidance (11) Key findings / arguments (12) Key recommendations for practice

OUTCOME OF LITERATURE SEARCH

2240 Records identified through database searching

1336 Records identified after duplicates removed

1336 Records screened 1123 Records excluded

108 Full text articles excluded213 Full text articles assessed for eligibility and further elimination of those pre 2005.

105 Studies included in scoping review

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Section 7

CLEARING HOUSES AND PROFESSIONAL BODIES

Searches of the following major clearing houses to identify pre-existing guidance documents,relevant to the domains above were also conducted:

Australian Government NHMRCNHS Quality Improvement ScotlandDepartment of Health Australian GovernmentWHOUS: Institute of MedicineInstitute for Healthcare ImprovementUnited States National Guideline ClearinghouseThe Guidelines International NetworkNew Zealand Guidelines Group, NLHNational Library of Guidelines (UK) Includes NICEScottish Intercollegiate Guidelines NetworkHealth technology AssessmentNICE

Where specific guidance documents were sourced, these were critically assessed using the AGREEtool.

3. Collation of key themes to inform the guidance and principles of medication management andassessment by the Project Team.

LITERATURE REVIEW THEMES

1. Challenges associated with hydration and nutrition at end-of-life in dementia.

2. The role of the multi-disciplinary team and the environment in the management of hydrationand nutrition at end-of-life in dementia.

3. Care planning and advanced discussions.

4. Artificial tube feeding at end-of-life in dementia.

4. Hand search of international and national policy and best practice guidelines - ongoing throughoutthe process in order to inform and populate the resources.

Limitations

Evidence on effectiveness and cost effectiveness was not explored due to time and resourceconstraints. It is challenging to include representatives from all relevant professional associationsand people with dementia in the initial phases of development. It is hoped that the targeted externalconsultation will include as many groups as possible in order to get feedback from all relevantstakeholders in this area.


References

1. National Institute of Neurological Disorders and Stroke(2016) Available online:http://www.ninds.nih.gov/disorders/agnosia/agnosia.htm

2. Royal College of Speech and Language Therapists(RCSLT) (2006) Communicating Quality 3 [CQ3]:RCSLT’s Guidance on Best Practice in ServiceOrganisation and Provision. London: RCSLT

3. American Speech Language Hearing Association(2001) Available online:http://www.asha.org/Glossary/Aspiration/

4. The Oral Cancer Foundation (2015) Available online:http://www.oralcancerfoundation.org/complications/xerostomia.php

5. Bayer, A. (2006). Death with dementia—the need forbetter care. Age and Ageing, 35(2), 101-102.

6. Pierce, M., Cahill, S. and O’Shea, E. (2014).Prevalence and Projections of Dementia in Ireland2011-2046. Available online:http://www.genio.ie/system/files/publications/Dementia_Prevalence_2011_2046.pdf

7. Department of Health. (2014). The Irish NationalDementia Strategy. Available online: http://health.gov.ie/wp-content/uploads/2014/12/30115-National-Dementia-Strategy-Eng.pdf

8. van der Steen, J. T., Radbruch, L., Hertogh, C. M., deBoer, M. E., Hughes, J. C., Larkin, P., ... and Koopmans,R. T. (2013). White paper defining optimal palliativecare in older people with dementia: a Delphi study andrecommendations from the European Association forPalliative Care. Palliative Medicine, Jul 0(0): 1-13.

9. The Irish Hospice Foundation. (2008) Palliative Carefor All Integrating Palliative Care into DiseaseManagement Frameworks. Joint HSE and IHF Report.Available online: http://hospicefoundation.ie/wp-content/uploads/2012/07/Palliative-Care-For-All-report.pdf

10. Tilly, J., & Fok, A. (2008). Policy Barriers to QualityEnd-of-Life Care for Residents With Dementia inAssisted Living Residences and Nursing Homes.Alzheimer's Care Today, 9(2), 103-112.

11 Hospice UK. (2015). Hospice enabled dementia care-the first steps. Available online:https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/hospice-enabled-dementia-care

12. The Irish Hospice Foundation / Alzheimer Society ofIreland. (2012). Building Consensus for the Future:Report of the Feasibility Study on Palliative Carefor People with Dementia. Available online: http://hospicefoundation.ie/wp-content/uploads/2012/04/Building-consensus-for-the-future-report-of-the-feasibility-study-on-palliative-care-for-people-with-dementia.pdf

13. O’Shea, E., Murphy, K., Larkin, P., Payne, S.,Froggatt, K., Casey, D., ... and Keys, M. (2008). Endof life care for older people in acute and long staycare settings in Ireland. National Council on Ageingand Older People (NCAOP).

14. Cahill, S., O'Shea, E., & Pierce, M. (2012). Creatingexcellence in dementia care: a research review forIreland's national dementia strategy. Availableonline:http://www.atlanticphilanthropies.org/research-reports/report-creating-excellence-dementia-care-research-review

15. Cahill S, O’Shea E, Pierce M. (2012). FutureDementia Care in Ireland: Sharing the Evidence toMobilise Action. Available online:http://lenus.ie/hse/bitstream/10147/234551/1/future_dementia_care.pdf

16. MacConville, Ú. D. (2011). Opening conversationsDeveloping a model for The Alzheimer Society ofIreland Developing a model for The AlzheimerSociety of Ireland of best-practice palliative careinterventions for people with dementia and theircarers. Available online:https://www.alzheimer.ie/Alzheimer/media/SiteMedia/PDF's/Research/Opening-Conversations_2011.pdf?ext=.pdf

17. Australian Government Initiative (2010). KeyElements of a Palliative Approach for People withSevere and End Stage Dementia Available online:http://www.caresearch.com.au/caresearch/portals/0/documents/whatispalliativecare/NationalProgram/PCDementiaCOP/A5-COP-booklet.pdf

18. Hallpike, B. (2008). Promoting good nutrition inpatients with dementia. Nursing Standard, 22(29),37.

19. Joosten, E., Lesaffre, E., Riezler, R. et al (1997). Ismetabolic evidence for vitamin B-12 and folatedeficiency more frequent in elderly patients withAlzheimer’s disease? Journal of Gerontology.Series A, Biological Sciences and MedicalSciences. 52(2), M76-M79.

REFERENCES

http://www.ninds.nih.gov/disorders/agnosia/agnosia.htm

http://www.asha.org/Glossary/Aspiration/

http://www.oralcancerfoundation.org/complications/xerostomia.php

http://www.oralcancerfoundation.org/complications/xerostomia.php

http://www.genio.ie/system/files/publications/Dementia_Prevalence_2011_2046.pdf

http://www.genio.ie/system/files/publications/Dementia_Prevalence_2011_2046.pdf

http://health.gov.ie/wp-content/uploads/2014/12/30115-National-Dementia-Strategy-Eng.pdf

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http://hospicefoundation.ie/wp-content/uploads/2012/07/Palliative-Care-For-All-report.pdf



https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/hospice-enabled-dementia-care

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http://hospicefoundation.ie/wp-content/uploads/2012/04/Building-consensus-for-the-future-report-of-the-feasibility-study-on-palliative-care-for-people-with-dementia.pdf




http://www.atlanticphilanthropies.org/research-reports/report-creating-excellence-dementia-care-research-review



http://lenus.ie/hse/bitstream/10147/234551/1/future_dementia_care.pdf

http://lenus.ie/hse/bitstream/10147/234551/1/future_dementia_care.pdf

https://www.alzheimer.ie/Alzheimer/media/ SiteMedia/PDF's/Research/Opening-Conversations_2011.pdf?ext=.pdf



http://www.caresearch.com.au/caresearch/portals/0/documents/whatispalliativecare/NationalProgram/PCDementiaCOP/A5-COP-booklet.pdf




Section 7

20. Prince, M., Knapp, M., Guerchet, M., McCrone, P.,Prina, M., Comas-Herrera, A., ... & Salimkumar, D.(2014). Dementia UK: overview.http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-_Overview.pdf

21. Health Information and Quality Authority; 2016:Regulatory Guidance for Residential Services forOlder People-Food and Nutrition Requirements.Available online:https://www.hiqa.ie/system/files/Food-Nutrition-Provider-Guidance.pdf

22. Health Information and Quality Authority; 2015:Guide to the Health Information and QualityAuthority’s review of nutrition and hydration in publicacute hospitals. Available online:https://www.hiqa.ie/press-release/2015-07-24-hiqa-publishes-guide-nutrition-and-hydration-review-public-acute-hospitals

23. Finucane, T. E., Christmas, C., & Travis, K. (1999).Tube feeding in patients with advanced dementia: areview of the evidence. Journal of the AmericanMedical Association (JAMA) 282(14), 1365-1370.

24. Fischberg D, Bull J, Casarett D, Hanson LC, KleinSM, Rotella J, et al. (2013). Five things physiciansand patients should question in hospice andpalliative medicine. Journal of Pain and SymptomManagement. 45(3):595-605.

25. Sampson, E. L. (2010). Palliative care for peoplewith dementia. British Medical Bulletin, ldq024.

26. Teno, J. M., Gozalo, P., Mitchell, S. L., Kuo, S., Fulton,A. T., & Mor, V. (2012). Feeding tubes and theprevention or healing of pressure ulcers. Archives ofInternal Medicine, 172(9), 697-701.

27. Teno, J. M., Gozalo, P. L., Mitchell, S. L., Kuo, S.,Rhodes, R. L., Bynum, J. P., & Mor, V. (2012). Doesfeeding tube insertion and its timing improvesurvival? Journal of the American Geriatrics Society,60(10), 1918-1921.

28. Health Service Executive and Irish HospiceFoundation. (2013). Planning for the future project.Available online: http://hospicefoundation.ie/wp-content/uploads/2014/03/Final-Report.pdf

29. Kane, M. (2012). My life until the end: Dying wellwith dementia report from Alzheimer's Society intoend of life care of people with dementia.Available online:https://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1537

30. NICE (2014). Dementia: Supporting people withdementia and their carers in health and social care.https://www.nice.org.uk/guidance/cg42

31. NICE (2006) Nutrition support for adults: oralnutrition support, enteral tube feeding and parenteralnutrition. Available online:https://www.nice.org.uk/guidance/cg32

32. Hughes, J.C. (2011). Thinking Through Dementia.Oxford: Oxford University Press.

33. Sherwin, S. (2008). Whither bioethics?International Journal of Feminist Approaches toBioethics, 1(1), 7-27.

34. Pathway-Dementia, N. I. C. E. (2006). Dementia:supporting people with dementia and their carers inhealth and social care NICE guidelines [CG42]Published date: November 2006 Last updated:April 2014. Available online:http://www.nice.org.uk/guidance/CG42

35. Evans, L. & Best, C. (2015). Managing malnutritionin patients with dementia. Nursing Standard,29(28), 50-57.

36. Harwood, R. H. (2014). Feeding decisions inadvanced dementia. Journal of the Royal College ofPhysicians Edinburgh 44: 232-7.

37. Dresser, R. (2014). Toward a humane death withdementia. Hastings Center Report, 44(3), 38-40.

38. Alzheimer Society of Canada (2011). Guidelinesfor Care: Person-centred care of people withdementia living in care homeshttp://www.alzheimer.ca/~/media/Files/national/Culture-change/culture_change_framework_e.pdf

39. Gillick, M. R. (2000). Rethinking the Role of TubeFeeding in Advanced Dementia. The New EnglandJournal of Medicine 342, 206-210.

40. Volkert, D., Berner, Y. N., Berry, E., Cederholm, T.,Bertrand, P. C., Milne, A., ... & Lochs, H. (2006).ESPEN guidelines on enteral nutrition: geriatrics.Clinical Nutrition, 25(2), 330-360

41. Hanson, L. C., Ersek, M., Lin, F. C. and Carey, T. S.(2013). Outcomes of feeding problems inadvanced dementia in a nursing home population.Journal of the American Geriatrics Society, 61(10),1692-1697.

42. Slomka, J. (2003). Withholding nutrition at the endof life: clinical and ethical issues. Cleveland ClinicJournal of Medicine 70:6, 548-552.

43. Van der Vathorst, S. (2014). Artificial nutrition at theend of life: ethical issues. Best Practice andResearch Clinical Gastroenterogy 28, 247-253.

44. Australian Government. (2006a). Guidelines for apalliative approach in residential aged care,enhanced version. Canberra, ACT: Available onlinehttps://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/pc29_guidelines_for_a%20_palliative_approach_in_residential_aged_care_150609_0.pdf

45. Mitchell, S.L., Teno, J.M., Kiely, D.K., Shaffer, M.L.,Jones, R.N., Prigerson, H. G., et al. (2009) Theclinical course of advanced dementia. NewEngland Journal of Medicine 361:1529–1538.

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https://www.hiqa.ie/system/files/Food-Nutrition-Provider-Guidance.pdf

https://www.hiqa.ie/system/files/Food-Nutrition-Provider-Guidance.pdf

https://www.hiqa.ie/press-release/2015-07-24-hiqa-publishes-guide-nutrition-and-hydration-review-public-acute-hospitals



http://hospicefoundation.ie/wp-content/uploads/2014/03/Final-Report.pdf

http://hospicefoundation.ie/wp-content/uploads/2014/03/Final-Report.pdf

https://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1537


https://www.nice.org.uk/guidance/cg42

https://www.nice.org.uk/guidance/cg32

https://www.nice.org.uk/guidance/CG42

http://www.alzheimer.ca/~/media/Files/national/Culture-change/culture_change_framework_e.pdf

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Section 7

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The Irish Hospice FoundationMorrison Chambers32 Nassau Street, Dublin 2, Ireland

Telephone: + 353 (0) 1 679 3188Fax: +353 (0) 1 673 0040Email: [email protected]

ISBN 978-0-9956718-0-5

www.hospicefoundation.ie

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